Asleep by Molly Caldwell Crosby: A great epidemic history story, up until the last chapter

Asleep: The Forgotten Epidemic that Remains One of Medicine’s Greatest Mysteries by Molly Caldwell Crosby (2010)

What it’s about:

Asleep is the story of the encephalitis lethargica epidemic that followed in the wake of the 1918 flu. Encephalitis lethargica is mainly known by the nickname “Sleeping Sickness”, but shouldn’t be confused with African trypanosomiasis, a tsetse-fly-borne malady that also goes by the “Sleeping Sickness” moniker. The two diseases are unrelated (as far as we know) but have vaguely similar symptoms.) It is terrifying.

Each encephalitis lethargica case began with an innocuous sore throat. Most people thought nothing of it at first. But then weird things began to happen. Patients began to fall asleep and not wake up for days or weeks or else began to lose motor control of their own bodies. They moved like zombies or puppets on strings. Still others retained normal motor function but began to feel uncontrollable violent urges, while remaining completely lucid and logical in normal conversation. (There was one story of a teenaged girl who dug her own eyes out of their sockets with her fingernails and then calmly denied doing any such thing because they had “fallen out during the night”. Otherwise, her behavior was completely rational.)

I couldn’t help but think of the Reavers on Firefly. (If you haven’t seen Serenity, I don’t want to spoil it for you. But seriously? Why haven’t you seen Serenity?)

Asleep follows the doctors and neurologists who tried to help these patients. Their efforts were overshadowed by the 1918 Spanish Flu pandemic, fragmented by war, complicated by the pathogen’s invisibility (whatever caused sleeping sickness couldn’t be isolated under microscopes of the day), and hamstringed by the fact that the symptoms varied so widely. In fact, sleeping sickness initially appeared to be several different diseases.

Crosby is working off of case studies from the era, so the overall effect is almost like reading a series of interconnected short stories (featuring some of the same lead detectives). Separately, the chapters are kind of creepy and puzzling, but together they add up into a portrait of the neurology and epidemiology fields in their nascent state.

The Upsides:

It’s incredibly vivid and well researched. My favorite passages in the book actually had nothing to do with science; they were the passages where Crosby describes the bustling streets of 1910s & 1920s New York City. Her descriptions are extraordinarily cinematic, and I loved the way she presented the history of the disease almost as an anthology of stories based on the original case studies. Plus, it’s just an interesting disease. Creepy, ethereal, & unresolvable.

I also liked the way the scientists and doctors investigating the disease were portrayed almost like detectives in an old-timey mystery novel. Reading Asleep is kind of like perching on the shoulder of these larger-than-life roaring-20s neurologists as they go to visit their strangest and most puzzling patients, and in that regard, it is absolutely awesome.

The Downsides:

I really wish this book had more science in it. As it stands now, it feels kind of unsubstantial, and the story doesn’t really have an ending. This lack isn’t really Crosby’s fault, since they never really found a clear causal agent for the sleeping sickness, but it was kind of a letdown. I also got the feeling that she was kind of avoiding the neurology to avoid retreading Oliver Sacks’Awakenings(which I totally want to read now), but since they never found the pathogenic culprit or a cure and she doesn’t explore the neurology, all we’re really left with is a historical account. A very well-written historical account, but I was expecting more.

Accessible to non-scientists?

This book is actually probably more likely to appeal to non-scientists than to people who are actually involved in epidemiology and medicine. Because the scientific record from that time period is kind of spotty and they never really found the culprit behind encephalitis lethargica, the book feels a little inconclusive. But Crosby did an excellent job of portraying the scientists on the trail of the disease as being characters (rather than generic lab-coat-clad scientist-props), and it really got me thinking about how impossible a World-War-I-era epidemiologist’s job really was.

No one managed to physically isolate a viral capsid until 1935. The “virus” was a theoretical construct that said diseases where the doctors and epidemiologists couldn’t find a bacterial culprit were caused by an infectious agent that was so small it slipped through the filters lab workers used to isolate bacteria. Vaccines were administered, not because we understood how they worked, but because we knew from observation that they worked. It’s actually kind of amazing that the public had so much faith in Germ Theory so early on.

I’d recommend it to:

People who like historical fiction & are interested in branching into historical non-fiction

People who don’t scare easily. (Because seriously, a lot of the cases in discussed in the book are terrifying, and everything is described in cinematic detail)

People who are curious about how epidemiology works (especially in the olden days when it was much harder to track the spread of viruses)

People who don’t know who Josephine B. Neal was, which I just realized is basically everyone because she doesn’t even have a Wikipedia page (!). Which is kind of upsetting, because she was one of the first female public health researchers to be allowed to head up a major institution. But I guess, since they never figured out what was causing their main disease, it’s natural that her name would drop out of the history books. So I’ll amend this recommendation to “People who don’t know who Sara Josephine Baker and/or Elizabeth Blackwell were.” Because there were, in fact, women working in science and medicine throughout the entire 20th century.

My personal take:

I liked it, but I felt like I was reading just the first half of a much longer book. I was a little disappointed.

Plague history stories are cool: rife with life-and-death-struggles, eccentric overeducated doctor-detectives who are racing against the clock and who often end up having to make huge theoretical leaps to solve their problems. And then there’s the race to implement the cure. How do we know if it works? How will we get it to work? What if it backfires with unintended consequences? Will we be able to get it to the people who need it in time?

I knew from the subtitle that this particular plague story wouldn’t end with a cure, but I was kind of expecting a “Scientists back then couldn’t have possibly noticed this, but modern scientists have recently realized that [X type of pathogen] induces kind of a similar effect” angle.

But Crosby’s book feels more like a ghost story. Except the ghost wasn’t a superstition. It was real. And it (or something very similar) could come back. “Will we be ready?” Crosby asks.

I have no idea.

This book really hit home for me because the symptoms really reminded me of chronic Lyme disease. Both diseases cause swelling in the brain stem (and sometimes in the spinal cord) which results in a terrifying array of physical and psychological symptoms. Encephalitis lethargica could kill you, turn you insane, or paralyze you inside your own body. Lyme disease symptoms usually aren’t quite so dramatic (although it can kill), but its symptoms are also widely varying, hard to describe, and difficult to diagnose.

The wide array of symptoms for both diseases are ascribed to the variations in immune response and neurological patterning between individuals. And believe me when I say that you could read dozens of books (or spend years in grad school) learning about brains and only barely scratch the surface of how the nervous system interacts with the immune system.

Even though we may not have discovered the exact pathogen that caused the 1910s-1920s outbreak of sleeping sickness, there are a lot of scientists working on infectious diseases that cause encephalitis (swollen brain) and meningitis (swollen spinal cord), and I thought it was a little weird that Crosby doesn’t really mention what’s happening now.

Asleep is a great bit of historical non-fiction, but I found the last chapter (the one before the epilogue, not the epilogue itself) where Crosby tries to wrap it all up really frustrating. She tries to give the reader a sense of closure and ends up overgeneralizing.

Also there was this sentence: “Somewhere on the evolutionary ladder of disease resistance, we may have stepped back a rung or two, and as a result, encephalitis lethargica took hold.” Normally, I wouldn’t harp so much on one sentence, but in this case, I think this one sentence really soured my opinion of the overall book.

I have basically zero tolerance for people who present evolution as a one-way progression. There is no such thing as“more evolved”, only better suited to the current environment. And being well suited to our complex and chaotic environment usually means making a lot of trade-offs. The trait you need to be strong in one area is likely to leave you vulnerable somewhere else. Especially in disease resistance, where a trait that might equip you to fight off one type of infection really well might make fighting another type of infection completely impossible. If you produce too few immune cells, you risk being overrun by bacteria and dying. If you produce too many, your overachieving immune system might kill you anyway. (And that is, in fact, why mortality from the 1918 flu was so high. Healthy adults’ immune systems mounted such a strong response that their bodies tore themselves apart trying to eliminate the virus.)

Crosby didn’t originate the phrase “evolutionary ladder”, but it’s a stupid phrase. No one should use it. Especially when talking about something as multi-faceted as disease resistance. And if you are going to use the ladder analogy, you shouldn’t talk about going two rungs down the ladder. That implies regression that can be combated simply by going back up the ladder. When, in fact, our immune system is having to adapt to a microbial landscape that has been radically altered by the Industrial Revolution.

Am I overreacting? Probably. But analogy choice is important. And Crosby is a graduate of the Johns Hopkins masters in science writing program. She should know better!

So, in conclusion, the case studies described in Asleep are going to stick with me, because they’re haunting and creepy. But I didn’t feel like I learned very much about science.

Inflammation= swelling that occurs when a bunch of immune cells converge on a particular area to battle a localized tumor or infection. Prolonged swelling tends to damage the local non-immune cells, because they’re stuck in the middle of the molecular crossfire and because immune cells sometimes get confused and attack cells that you actually need. If this happens in your brain, all kinds of bad things can happen.

Epidemiology= the study of how diseases (or other health conditions) are distributed through the population over time. Infectious epidemiologists track how viruses and bacteria spread.

Cytokine storm (aka cytokine cascade) = the phenomenon of immune systems overreacting and killing their host in an attempt to wipe out an infection. Named after cytokines, the chemicals that immune cells use to talk to each other. Crosby doesn’t talk about this much in the book, but I think it’s one of the most oddly poetic scientific phrases.

tl;dr: Asleep is a lovely piece of historical non-fiction. Right up until its immensely unsatisfying ending. But the stories in it are creepy and haunting.